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Monday, November 15, 2010

In the summer of 1976, I was four years old.This was the summer Americans were told to go on the road and rediscover America.Our family followed the national advice and began a road trip that would take us from Oklahoma to Kansas, Missouri, Nebraska, Colorado and New Mexico.It was a magical time.We piled into our brand new ’76 Chevy Impala and tasted the freedom of the road.Even though I was only four at the time, two experiences were seared within my mind during those kodachrome brilliant hot summer days.

While in Colorado we visited an amazing amusement park called Santa’s Workshop.Ten miles west of Colorado Springs, they have North Pole experience complete with a Candy Cane slide and the tallest Ferris wheel in the world.I will never forget the moment I rode that wheel.My family peered up at the huge ferris wheel that was built upon a mountain at a 7,500-foot altitude.The wheel operator dared us to ride the enormous structure.My mother chuckled and said she would not, my father laughed as well.I stepped forward.I said I would like to ride.The carny asked if I was sure. Did I really want to ride all by myself? I nodded yes, and was lifted up into the seat.The carny man pulled down the restraining bar that floated eight inches above my legs.I looked around to see, and found I was one of very few people who had attempted the ride.As my seat rose ever higher, my knuckles whitened around the restraining bar.I realized how easily I could fall.I looked at the great space between my legs and the bar and stared at my little fingers pressed so tightly on the cool metal.I looked down at my scuffed canvas shoes as they dangled so many feet above the crowds.As I reached the pinnacle of the ascent, I looked down so far below at my small family.At that moment, I felt so proud, so strong; I alone had braved the ride. I was filled with fear but I would not let it panic or conquer me.I was so glad that I got to do this.I cherished the moment and the trust my parents had in me, that even though I was only four, I could be brave.I was joyous and I was on top of the world.

That was an empowering experience.I floated bravely above for a few moments, but most of life is lived upon the ground.It is just as important to find empowering events within one’s daily life.So my other amazing experience of the summer of 1976 would be considered a boring reality to many, but I still remember and cherish the opportunity to get ice from the motel ice machine.To this day I cannot pass a hotel ice machine without smiling.Have you ever noticed as an adult you must crouch down slightly to get ice from these machines?I have often thought they were designed with a child’s height in mind.When I was four, many privileges and responsiblties were literally out-of-reach.I could not reach the sink to wash dishes or get a drink.I could not reach the dishes in the cabinets to set the table.But as we stayed in hotels, I began to relish my new duty of getting ice.I would take the ice bucket and would run down the hall to the ice machine.I would listen to its calming motor hum, as I would place the bucket on the lever.The rattling clunks would echo inside the machine, as the motor would gear up.The hole above the lever would begin to spew the mounds of ice into the bucket.Hotel after hotel, I would do this ritual and I discovered there were many types of ice.In some motels it would come out as cubes, sometimes it would be frozen rounded discs and sometimes wedge shaped smiles.By far, my favorite ice was the donut type.This ice would cascade out in circles.My sister, my brother and I would eat this ice like it was popcorn.I loved the way it would roll within my mouth.I loved the delightful chill of slipping my tongue inside the hole within the ice.I would press my tongue until eventually the ice would turn thin and sharp, and then I would crunch my teeth upon the shards.I loved chewing ice, but even more I loved the ability to get that ice myself.

So the child I was became the wife that stood in front of other ice machines.Pastel pitchers had replaced the old plastic bucket.I had lived much in the 33 years between hotel ice machines and hospital ice machines.I had married, given birth, managed stores and was well acquainted with both responsibility and privilege.So as I begged for access to information and asked how I could help my husband, I was handed a plastic pitcher and given the one duty I could be trusted with.I could get him ice water.Each day, many times a day, I would get Fred ice.I would leave the room and carry that little pitcher down the hall and fill it up again and again.I grew concerned as time past that the facilities did not replace nor clean the pitcher.

In the first hospital we had the same pitcher for two weeks before it crashed upon the floor and shattered.It was then replaced.Fred went for another two weeks with his second pitcher.It was a mauve pink pitcher and I took it home upon discharge.(It became my water bucket while painting 73 Cents.)At the second facility, Fred again was given a plastic pitcher.After a week of using it, I came to the hospital one morning to find a black substance inside the bottom of the pitcher.I showed it to the nursing supervisor, she alerted other floors about the potential for patient harm.While Fred was hospitalized, we saw that facility take steps to discontinue use of the re-useable, yet never washed, plastic pitcher.

So as Fred grew more ill, I often thought of ice and ice machines.The first thing I would do each day was to get him ice.The last task before leaving his room was to check and see if his pitcher was still filled.It made me sad. Sometimes I too, would drink the water and chew the ice.I would think of the ice I sucked upon while I labored before the birth of our two sons.I would think of the happy anxious father who would eagerly go down the hall to get me ice chips.He was so nervous he practically bounded down the hall.I chucked through the pain of childbirth, upon seeing his behavior, but at least that duty made him feel useful.

Those are thoughts induced by chewing ice.Eventually thoughts like these grew into a blog.Eventually they were shared with anyone who would like to see them.On December 12th I wrote of ice.I wrote about the ice that chewed the bowels of a very important ship.I wrote about what medicine can learn from events within our past and the importance of wireless technology on the Titanic.The blog was called:Social Media on the Titanic: RT @Titanic #ICE BURG ahead :(

Because of that post I met an amazing man known as the Ice Chewer on Blogger and Twitter. He posted this comment:

I feel grateful that you are writing this blog. Our inefficient health care system manages to stay this way because patients and families, at the moment when they are most vulnerable, have to spend their emotional resources dealing with unilateral and arbitrary decisions of hospital administrators, insurance companies, and doctors. And that is how we lose our energies to fight for change. But seeing that you and others who went through a terrible experience are not giving up, gives us all some hope and inspiration to fight. Thank you!

That is how I met Yuval Sheer.He lives in New York and writes a wonderful blog that reflects upon life and art and, of course, chewing ice.In the classic sense of knowing someone by meeting him in person, I suppose we have yet to meet.I feel as though I know ice chewer through his quirky writing, interesting photos and the amazing artistic interpretations of created by his dear Mettookonet.

The ice chewer has posted comments on my blog 10 times and we also touch base on Twitter.In July, I was honored to receive a precious copy of his limited edition book: “Thoughts Induced by Chewing Ice.”It is filled with many posts of wisdom and makes me wish I could be far wittier than I am.The ice chewer writes with wit and humor as he chews on cold ice.I blog of pop culture, health and my family with deep emotion and often hot tears.We both use photos and art frequently to make points within our posts.

My favorite page within his book depicts an artist painting an I-phone at an easel.This page was based on a post from November 5th, 2009.The text of the post was as follows; “I took a photo with my cell of a man hanging his photography work on a wall at the subway station. He got angry and told me: "good luck with your non-creative life”. So I got creative, and blogged about it.” -posthttp://icechewer.blogspot.com/2009/11/good-luck.html

I love this statement.It is not enough to only paint.There are many types of artists and art, just as there are many types of ice.It is the thoughts induced by chewing ice and art that lead to innovation.Those thoughts can lead to change, to action.They can create a new hospital policy.They can lead to a change in national laws and they come from a willingness to share and contribute to the whole.Thank you so much Yuval Sheer for sharing your thoughts with me.Thanks for placing a picture of an artist on the 73rd page of your book.

The story matters, whether it written on 73 pages or paid for with 73 cents.I am glad I can share that story.I am glad I can bring it all to the table and present the patient voice.Little girls who ride Ferris Wheels can grow up to be brave women who climb high ladders and share sorrows for the entire world to see.Those women can meet brave men who share their vision and realize that every event and every person is important.These are the thoughts induced by chewing ice.

Thursday, November 11, 2010

Did I ever mention Fred was for the most part a stay-at-home dad?Yes, he was an adjunct at three universities and worked part-time at the video store, but otherwise he was with the children.When Isaac was a baby and Fred would have to wile the hours away taking care of an infant, he would often strap Isaac into a front-pact baby carrier and go to Politics and Prose.Politics and Prose was Fred’s favorite store.He would spend hours there.As Isaac grew, Fred would place him first in the backpack, and as time passed, the stroller, and off they would go to Politics and Prose and divide their time between the film section and the mouse hole in the children’s section.

This was Fred and Isaac’s routine for three years.Then in March 2009 Fred became ill.Fred could no longer visit bookstores.I would bring books to him instead.On his birthday, I brought him three books from P&P, and due to his intense pain and his pain medication, he would never finish one of them.

When Fred died in June, we received many letters of sympathy, but one letter I treasure the most came from a P&P bookstore employee.She said how sorry she was that we had lost Fred and recounted all the many times Fred had carried Isaac in her store.I had had no idea that they had spent so much time within the store. While little Freddie was in school and while I worked, Fred and Isaac were surrounded by a maze books in a room filled with a love of knowledge.My eyes filled with tears as read of this vision of a father and son.

While painting the mural 73 cents in July, many staff members came to speak to me about the painting.Even the co-owner Barbara came out a few times to talk about medicine and paint.

When Howard Dean had a book signing at Politics and Prose, he came out to see the mural with one of my friends.When I tell people how to get to the mural 73 cents, I often say you can’t miss it.It is right by Politics and Prose.

So you can image how happy I was to be invited to show my canvas work at Politics and Prose later this month.The canvas work I have done will be displayed in the coffee shop in the basement of P&P from November 19,2010- January 5,2011.The opening reception will be Monday, November 22 from 5:00-7:00 pm.I will be showing many pieces about our personal struggle for information during Fred’s cancer journey.I will also show some pieces that comment on social media, open government and Meaningful Use.I hope you can make it.

I am glad I will see Fred’s face again inside of P&P, or as my little Isaac calls the store: Daddy’s Library.

I recently attended the Kaiser Permanente Executive Leadership Conference in Washington, DC. KP leaders gathered from all over the US for this event. At the opening of the meeting, KP showed a compilation of several videos to present my art advocacy mission supporting patient access to the medical record and the painting 73 Cents. It was a very powerful video, and after watching it, several members of the audience came up to talk to me about … my hair color.

I am one those people blessed to have been every hair color. I was born with a thick head of black hair. In a month or so, it fell out and came in blond. As I grew, my hair turned red and was that color for many years. By the age of 8, my hair was light brown. In my teens, my hair turned to a dark brown. With having such an amazing array of colors in my youth, I found I didn’t feel constrained to any one color, and in my twenties, I decided to lighten my hair back to the red of my childhood. When Fred grew ill, I was still the light red I had been for many years. After Fred died and I began my painting advocacy, I continued to keep my hair a light red. While working on 73 Cents, I spent days painting in the bright sun, which bleached my hair even lighter.

As the months of painting and grief progressed, I looked at my roots coming in completely gray. I now could truly say I had had every color of hair. But I am only 38 and do not plan to go gently in that gray night. So I went to a local salon for a color consultation. The nice stylists there told me I should go darker as it would look nicer with my complexion.

I submitted to their excellent advice. While I sat in the chair, I spoke to the stylist about hair and cancer. I told her about my husband’s 10-week hospitalization. After about six weeks, his hair had grown so long. We inquired about barber services. The hospital informed us there was a nice lady who performed haircuts for patients. She was very nice, but she did not have a lot of skill with cutting the hair of a bedridden patient. The entire experience turned into a farce that Fred, his folks, and I shared with friends for weeks to come.

After I shared my story with my hairdresser, she told me a tale of her own. She told me how she was the last one to shampoo and style her mom’s hair while her mother was in home hospice. It was a beautiful tale. It made me want to cry. I could almost see her hands gently washing her mother's hair. I could hear the happiness and sorrow she felt in her attempt to help her mother. Yes, she made her mother feel pretty; but this offered more than that. She touched her mother. She caressed her at a point in her life when she so need to be touched. She anointed her hair with oil…

So I am not bothered that the most asked question after viewing a video of 73 Cents was about my hair. I know often when we talk of hair, we might also be talking about beauty and death. Perhaps I have gone darker … because I have gone darker. Like Dark Willow or Dark Phoenix, I am not the same as when I started.

I brought two portfolios with me to the KP conference. One is light and cheery; it is my "before" album. For so many people ask if I was always an artist; I have always been an artist. I used to paint book characters and children's bedroom murals. The before portfolio shows the work I have done with children for the past eight years. The "after" portfolio is for the Medical Advocacy Mural Project. It is filled with images that often disturb but still retain hope. I like to create images that make you think, even if they tend to cause upset. This portfolio is darker, but there are still windows of light. This portfolio contains medical murals, jackets with patient images, and canvases I paint on-site at conferences.

Recently at Health 2.0 in San Francisco, I met a very beautiful woman named Diem Brown, and I painted her sadness.Diem was only 23 when she was diagnosed with ovarian cancer.She found herself adrift with no one to ask for help.Wedding and baby shower invitations were arriving in the mail while Diem was struggling to pay for chemotherapy wigs and to arrange drivers to her various medical appointments.She thought, “Why is this so hard?Why isn’t there a registry for cancer sufferers like those that exist for brides?”Due to Diem’s valiant effort such registry exists now, and it is called MedGift. Her story touched me so that I painted it into the Health 2.0 painting Bridging the Great Divide.

In this part of that painting, the bride is combined with the cancer patient. The best point in her life is combined with the worst. The sorrow is palpable. The cancer bride's hair is falling out, and strands are held in her hand. She is reaching for the apple of knowledge. In that apple is placed an eye. Knowledge without vision helps no one.

Weeks after I painted this, I was sent the wedding photos of Katie Kirkpatrick. If you have never seen these photos, I recommend you take a moment to view them. Katie was suffering from end stage cancer when she married her high school sweetheart. Under her lovely gown her limbs were swelling as her organs began to shut down. Just glancing at the photos made me cry, as I saw a body so similar to Fred’s before his death. She was dying and she was beautiful and … her hair was so pretty. She died five days after her wedding.

Thank you, Diem, for sharing your vision with us all. I am sure there are many people who will thank you for creating MedGift to help them when things seem their worst. Thank you, Katie, for sharing photos of your happiest day while so sick; we shall never forget you.

And thanks to the folks at the Kaiser Permantente who were brave enough to invite a cancer widow to an executive conference to remind us ...we are all patients in the end.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."